People write in their journals all during this event, I blog. Partially because my penmanship isn’t so good anymore and my hand tires out and because this is where I work out my sh@t. Today was fine until the last ten minutes before lunch. We did a soul retrieval meditation where you find your inner child and hold them close, becoming their protector. Keeping them safe, loved and cared for. Bringing your inner child back into your heart. This is…
What started out as a good day ended pretty horrible. Getting the last few items together for me trip, I ended up severely exhausted. I don’t even know if exhausted is the right word. I had to get something in my daughter’s closet for her and it required me to go to the floor. I really knew this was bad because I was so tired, I just didn’t realize how bad. I couldn’t get up. I didn’t even have the…
What fun yesterday was. My MS friends and I joined a beginners class to learn mahjong. I must admit I did have a lesson before with my mom and my girlfriends which was a lot of fun but it was difficult organizing everyone to get together again. I’ve been wanting to learn mahjong for a long time. I originally brought the idea up to my MS girls because we are around during the day and I thought it would be…
If your doctor has suggested Ocrevus you are certainly moving up the ladder of disease modifying drugs for multiple sclerosis. With each of the IV drugs especially come side effect risks. Ocrevus is no exception. The most serious they show is: Risk of cancers (malignancies) including breast cancer. Follow your healthcare provider’s instructions about standard screening guidelines for breast cancer. That’s a pretty serious risk to consider. They also talk about PML Progressive Multifocal Leukoencephalopathy. This is the brain infection caused…
A very interesting article found on the web from Science Magazine written by Mitch Leslie. This article has been copied below. https://www.sciencemag.org/news/2018/10/elusive-molecule-sparks-multiple-sclerosis-may-have-been-found Our immune cells normally pounce on intruding bacteria and viruses. But in multiple sclerosis (MS), immune cells target the nervous system instead. Now, researchers may have pinpointed a long-sought molecule called a self-antigen that provokes these attacks, pointing a way toward potential new treatments. “The work is monumental, and it’s tantalizing,” says neuroimmunologist Hartmut Wekerle of the Max…
I’ve been looking to get funding for a handicap vehicle for the past few months. It hasn’t gone as well as i was hoping. On top of this my own car is a lease which isn’t over until July 2019. My mother kind of yelled at me for getting ideas in my head prematurely. She isn’t wrong but what I needed to explain to my mom that it wasn’t so much the idea of the handicap vehicle it was the…
https://www.facebook.com/donate/249027742420824/ Why We Want to Create a World Free of MS 9! years ago, when I said I wanted to ride 30 Miles for an MS Bikeathon, my step-but-real sister Jamie said “I can barely walk 300 feet – why do they do these events that people with MS could never do?” I said “Maybe it’s because we hope someday you’ll be able to.” I have done this event for 9 years now. Life is harder for Jamie, but I’m…
Does the change of seasons affect your MS symptoms? I know that the actual seasons affect symptoms like the heat of summer or the cold of winter but I mean the transition between the seasons. I’ve had a tough time with my walking lately and with fatigue. My physical therapist says season change. I found this article online http://tamingmultiplesclerosis.com/multiplesclerosis-seasonchangesarticle.html. Usually I feel effects of season changes maybe from winter to spring. It’s unusual for me to feel this way from…
Sometimes it is overwhelming dealing with a chronic illness and navigating through daily life. I know I’ve lived there. I use to unleash it all on my mom. She has so much empathy and I adore her but she doesn’t have multiple sclerosis and she didn’t, she couldn’t, fully understand. I was sad for a long time until I changed my thinking and changed my perception on life. I have a life coach that helps me stay on track and…
I see my neuro who I’ve been seeing now for over 20 years. These appointments always seem to upset me. Not the doctor, the reality of my disease. It isn’t that I don’t understand multiple sclerosis or I don’t know the current research, I like to think I am somewhat current on the disease. It is more going to a doctor and leaving with the knowledge that your not going to get better. It’s very silly actually because I know…
